Traditional Political Advocacy in the face of Public Apathy - A Losing Formula

Advocacy Ruts - Part 3

By Craig Maupin at http://www.cfidsreport.com

No discussion of advocacy would be complete without mentioning politics.
Diseases such as AIDS, cancer, and diabetes are all issues close to the hearts
of people worldwide. When it comes to organized advocacy for these illnesses,
political lobbying is the route most often taken. More than ever, people look to
the realm of politics to solve many different problems.

Advocacy efforts for chronic fatigue syndrome have also primarily been
focused on the political realm. After all, political lobbying is the most
popular advocacy strategy for almost all diseases. In the case of CFS, there is
no exception.

One advocate states: “To conquer CFIDS (CFS), our community needs strong,
consistent advocacy where it matters most: in Washington D.C. ” He promises
that, “the allocations and/or restoration of funds; the creation and promotion
of advisory committees; the establishment of education and training programs;”
will result in “gains for those with CFIDS.”

This form of traditional political advocacy sounds simple -- more is better
--, because it is. Political success
is often gauged by numerical goals. How many votes did we get? How many letters
did we swamp our congressman with? And most importantly, how much money will be
spent? Success is simply measured by the government's promise to do "more".

So in reference to CFS, is traditional political advocacy working? After
years of emphasizing traditional political advocacy, are the usual numerical
gauges going up? Should we assume that these numerical gauges -- more votes,
more funds, and more committees -- will defeat CFS? Given our current situation,
are our expectations of traditional traditional political advocacy reasonable?

Political Advocacy without Public Concern. A Dangerous Formula.

The typical gauges of political success for chronic fatigue syndrome (CFS) are near empty. In proportion
to the amounts spent on other illnesses, the government spends very little.
Politicians rarely mention CFS. The safety net offered to citizens with other
disabling illnesses can be indifferent and unresponsive to PWC’s. Amidst these
problems, many feel that a continuing emphasis on traditional political advocacy will
fix these disparities.

But CFS isn’t the typical illness. Political advocacy, while
necessary, is a gamble with CFS. A conflicting message is coming from our
political efforts. Year after year, PWC’s complain that the government seems to
do "too little". However, when the government does "do more", often the efforts
are correctly cited as wasteful, counterproductive, and geared toward special
interests.

This column is not a condemnation of political advocacy. Political advocacy
for CFS is a necessity. Whether we like it or not, the government’s actions will
greatly affect us all. If only to defend our interests, we need to remain
politically engaged.

This column is about our expectations, our emphasis, and our application. For
years, we have prioritized a simplistic, traditional advocacy approach --
politics. We closely watch "how much" is spent on CFS research.
Yet, we fail to realize that it is "what" the money is
spent on, and what is funded that is more important for CFS advocacy.
And we also fail to realize that "how much" is spent on CFS is attributable to
public concern about CFS. Until there is public concern about CFS,
there will be little federal funding that is plentiful or effective.

Government actions mirror public attitudes…

Ask a random person on the street what his or her thoughts are about 'chronic
fatigue syndrome'. You will receive many different answers. Some people are
knowledgeable about CFS. Perhaps they have treasured friends and family who have
been felled by the disease. They understand that CFS is disabling, painful, and
serious, and physiological. They also may understand that the name is misleading
and trivializing.

But chances are, you will meet many others who know very little about the
illness. Some of these people will be misinformed. Some may be influenced by the
benign name “chronic fatigue” and wrongly assume the illness is deconditioning
or "fatigue". Others may believe sufferers of CFS perpetuate their own illness
or even pretentiously feign illness for personal gain. They need to get off the
couch, get some exercise, and take charge of their future.

Here is the clincher. Public apathy, misunderstanding, and attitudes toward
CFS will simply be mirrored by the politicians, government agencies,
bureaucrats, and researchers responsible for addressing the illness. It has been
this way in the past. It is this way now. It will continue to be this way in the
future. We should expect no less.

If a large portion of the public possess these attitudes toward CFS, then we
should not be surprised if a similar portion of every dollar we secure is spent
on researchers who reflect those feelings. Therein lies the limitations of
traditional political advocacy for CFS.

At the moment, an honest appraisal of our political efforts should come to
one, clear conclusion: our efforts are providing fuel to both friends and foes.
Publicly funded research routinely churns out philosophical diatribes that CFS
is "perpetuated" by sufferer misperceptions, stress, or trauma. At the CDC, the
agency is likely to churn out a study one week that portrays CFS as a
physiological illness. Another study may portray the illness as a "regional
response to stress" or one of many "fatiguing illnesses". Two psychiatrists,
experts in PTSD, were recently tapped by the CDC's director of CFS research.
Should we continue to assume positive outcomes from increased federal funding
for CFS?

Before we move forward, we should ask some pertinent questions. Who do we
expect to be the financial beneficiary of any future political victories for
more funding? It is
easy to see where government agencies who research "fatiguing" illnesses could
end up taking us, without capable leaders watching over "what" and "who" is
receiving funding for CFS. Our current political efforts doing more harm than good.

Digging a little deeper

In 1993, a Temple University laboratory discovered a new, exclusive molecule
in CFS patients. No media coverage ensued. A few years later at John Hopkins
University, new findings surfaced on orthostatic intolerance and low circulating
blood volume. No coverage. This year, a study claimed CFS cost the economy nine
billion dollars . Very little coverage. For your doctors and your friends, these
important findings may as well not have occurred. And regrettably, this lack of
knowledge is often reflected by our government agencies.

Winning the public opinion war takes talented, charismatic leaders who have a
driving desire to step onto the public airwaves and print. They must anticipate
rare opportunities. They must turn what appear to be persecution and heartache
into opportunities. Effective CFS advocacy must plan ahead. Our advocacy
must see opportunities in future physiological or microbiological research
findings or personal stories.
Opportunities come once; then they are lost.

There is no better example of an advocacy struggle turning on a dime than AIDS.
Like chronic fatigue syndrome (CFS), AIDS advocacy struggled with unique
problems. Since many considered
AIDS sufferers responsible for their own predicament, they did not want to lend
their taxdollars to the disease. Does this sound vaguely familiar? The dire
straits AIDS advocacy once faced is often forgotten amidst the recent success of
AIDS advocacy.

AIDS advocates set about to convince everyone from 90-year-old, God-fearing
grandmothers to swinging college students that AIDS is a dangerous public
concern to all. They knew that AIDS had to be
feared. AIDS advocates knew they
could protest, organize, and petition all they wanted, but until the public saw
AIDS as a serious problem, they would be spinning wheels. AIDS advocacy knew
where true power lay.

Today, funding for AIDS far outpaces that of other illnesses. Dollars roll in
easily to AIDS charities. AIDS is on the newsstand and TV. Frequent attention to
AIDS is driving political momentum. The message the public consumes is fueling a
collective political desire. First, for political advocacy for CFS to yield
positive outcomes, we must focus our efforts on the root of democratic politics.
We haven't laid that groundwork yet, and we are seeing the results of the
stagnation in low funding rates.

CFS: Our political advocacy must be specific and knowledgable

We must also be specific in our political advocacy efforts. At the moment,
there is the possibility of five future new "Centers of Excellence" for CFS research.
These centers have been requested by advocates on the CFS Advisory Committee to
the Health and Human Services Department. Should we simply assume these centers,
should they be built, are a victory?

No. We should not assume more funding is a victory.
The CDC is
increasingly spending the money in its CFS program on post-traumatic stress disorder and
emotional aspects of "fatigue". And, what will happen to people who are severely disabled when
those funds produce "results" which are portrayed to the scientific community as
"empirical"?

An honest appraisal of our past political efforts should only come to one
conclusion. Political efforts can reinforce misinformation about CFS just as
much as they can create positive momentum. A varied cast of beaurocrats now feed
on the modest gains of our political advocacy. Simply asking for "more", failing
to be specific or knowledgeable as to what needs funded, and hoping for the best is fine
advocacy for most illnesses. It is a dangerous gamble for those with CFS.

We need to fund more private research. And we need
to discuss what is funded federally as much as ask for more federal
funds.

Realistic Expectations

Our expectations of political advocacy for CFS should be tempered, sober, and
realistic. "More funding" -- funding in the face of public apathy and little oversight
--certainly would classify as advocacy. It is not effective advocacy. The table
must be set before CFS advocacy begins to gain momentum. To set that table, our
focus and emphasis has to change -- to be specific. How we think has to
change. We have to turn the root of democratic power first, fund our own
research, and get our own message out to the public.

This is a disease in which exclusive immune and circulatory findings have
produced a new understanding. This is a disease where public attitudes, and even
government agencies, have fostered misperceptions, apathy, and even persecution
of those with CFS. The public knows very little of this. The public dollar,
conceived from our political efforts, will reflect this apathy and ignorance,
each and every day. It will only change when our private efforts --
privately funded research and media -- make new headway against CFS.